Skip to main content


Showing posts from November, 2016

Life Hack

I've always wanted to come up with some awesome life hack of my own. is not the day!

Ha ha...but I do want to share the most phenomenal discovery that has changed my life.  Believe me, it has to be an incredible hack in order to excite me.

If you are over 50 years old or suffer with a disease like Lupus or Fibromyalgia, then you will be able to relate.  Watery eyes!  I have been suffering with this to an increasing degree for over a year.  If I yawn, the tears run down my face.  If the wind is blowing, my eyes water.  If it's cold, my eyes water. As soon as I put my make-up on, my eyes start watering.  It's annoying.  My tears seem so salty, the skin under my eyes is constantly burning and dry.  By 8 am, my makeup on at least one eye is completely off.

This past weekend, it was so bothersome, I went and bought lacquer eyeliner.

Out of the blue, something showed up on my Pinterest feed about watery eyes.  Their remedy was a dab of Vaseline in each corner of yo…

Around we go...

Updates from the trenches include the good, the bad and the ugly...

Sam has turned the corner on the pneumonia!  Hooray!  He is up and around and it seems that for now, things are improving with the antibiotics.  He threw me a curve ball this afternoon when I got home from meetings and a doctor appointment with Spencer...He's moving out!

Gah!!  I thought I had successfully convinced him that saving $1200 would be the way to go.  I reminded him of all the wonderful things he could buy for $1200 instead of paying rent.  I told him how much we would miss him.  I made him think life would stop without him here!  Just kidding...I didn't do any of that.  Well, I do think it's a waste of money to spend on apartment living when you have a home 2 miles from the college you attend.

Alas, he's Mr. Independent and the pull from his friends is greater than his dear old mom.  I realize he will only be living 4 miles away but still! My kids are my friends and I love their company s…

It's raining, it's pouring...

We are 3 for 3!

Today was Spencer's turn for the urgent care.  Never underestimate the power of God to keep you humble and on your toes.

His problems actually started on Wednesday.  He was complaining that his left eye wasn't focusing and his brain was hurting deep inside on the left.  I did what I always do..."Do you want some Advil?  If you're nauseous I have some Zofran too.  Maybe just take a nap, your eyes are probably strained from all the computer work."

I offer the worst  kind of sympathy but I don't know what to say anymore, and half the time, the symptoms are so random I have no clue what to do.  I do know that it isn't reasonable to be running to the doctor every time something comes up.

It went away after a few hours and then I didn't hear another thing about it mostly because he's been at his dad's house for the holiday.  I guess this morning it flared up again but this time he couldn't focus on anything close.  In order to …

Giving and Receiving

In the spirit of this week of giving thanks, this post is about giving and receiving but it's not what you are thinking.

Last Friday/Saturday, Sam started getting sick.  It sounded like your basic, run of the mill head cold you get in October and wrestle with til April.  On Sunday, I was summoned by my Wasband that he had gotten worse and maybe a trip to the hospital was in order.

I went over to his house where Sam was, to assess the situation.  He had no fever, a wicked cough and a sore throat but that was about it.  Without a fever, I figured it was just a man- cold.  I teased him a little, got him some cold medicine, zinc, vitamin C, apple cider vinegar, ibuprofen for his joint pain and later in the day, took him some homemade chicken soup for them.  (Note: my Wasband is completely capable of taking care of a cold but he had been out of town for a few days and hadn't had a chance to go grocery shopping which is why I offered the soup.)

Sam said, "I really feel like s…


Today is Thanksgiving.  In fact, it's 2:30 in the morning and I am still awake.

I'm not making pies, or prepping the bird.  I'm not busy cleaning for company to arrive or finishing up the laundry.

I had planned to be in bed 6 hours ago.  I had big plans for a quiet day as the kids are at their dad's for the rest of the week.  I was selfishly looking forward to doing nothing.  Well, not nothing.  I had some things planned that have been neglected the past few months.

As is usual and customary, making plans is an activity in futility.

Instead of a quiet night, I ended up working until very late.  At nearly midnight, while I was still at work, I got a series of text messages from Shelbie. (The kids are at their dad's for the holiday.)
 She felt like she was having a heart attack or another stroke.  She was in extreme pain in her left jaw and it radiated down to her shoulders and arm.  She was pretty scared, as is to be expected after the month she has had.  I was …

So that's why?

It's a great day when one of God's little mysteries comes to light, don't you think?  That great day happened to me on Saturday!

Shelbie and her friends had their Friendsgiving.  It was a blazing success from what I hear.  After dinner, they wanted to go to Lava Hotsprings which is a little over an hour drive from home.  Since Shelbie still can't drive (which I've decided is dumb...another day, another story) I got to take them down.  It was dark when we left and even darker when we arrived.

The hot pools are outside and there are three large pools of natural springs, hot water.  They have some canopies over the pools, lights to create a nice little mood for soaking with 200 of your 'closest friends', (who probably hadn't showered on their way into the pool), on a 40 degree Saturday night.  The steam from the pools was heavy at times as the hot water met the cold night air.

I'm realizing that as I get older, my germaphobic tendancy gets worse or ma…

All the light we can not see

Do you spend much time looking at the night sky?  We just had the opportunity to see the Super Moon but honestly, I missed it.  I was distracted and when I did remember, it wasn't the optimal time and clouds hid the moon, super or not. All I saw was a cloudy dark sky.

Spencer recently took this picture of the Milky Way at night, up in the mountains about an hour from home. He loves shooting pictures at night.  By leaving the shutter open, he is able to capture amazing images like this as his camera collects all the light from the stars.   This picture has not been edited or changed to create more or less than what you see.

When he showed me this picture, I was amazed.  I couldn't stop looking at it.   How many times do we look Heavenward and see nothing but a few stars, the constellations we learned in 1st grade and maybe a glimpse of the Milky Way if the moon and clouds are just right.

I can't help but think about how this picture is a metaphor for life here in mortality…

The Standard Issue

I have found myself being amazed at how difficult life can be when you weren't offered the standard issue that you perceive everyone else ended up with.  The reality of our unique situation made for one very long week!

What made it long...everyone has been in a funk!  It has made me so aggravated at times and more than once, I expressed my aggravation in an aggravated way...😒  If you think toddlers are hard, try living with three medically challenged adults who are trying to plod through life in the most unconventional manner.  It's not easy for them and most of the time, they press on in an energetic spirit but not this week.  I don't blame them but at some point, the sorrowful, bad attitudes get wearying.

I guess, if I think about it, I only get aggravated because I know I can't do anything to make their situations better so, I'm more angry with myself than I really am with them.  It's just too much heartbreak at once and I feel like I'm smothering when…

The graveyard within

I read this poem a short while ago and it intrigues me.

You will become a graveyard
of all the women you once were
before you rise one morning
embraced by your own skin.

You will swallow a thousand 
different names
before you taste the meaning 
held within your own.


Amazing words right?  I wish I could say that I have finally become that graveyard of once was. Instead, I find myself swallowing a thousand regrets, uncomfortable in my own skin and the meaning of my purpose here is often lost on me.

It seems there are so many people around me who have been stung with the loss of loved ones in the blink of an eye. No warning, they're just gone.  Young. Older but young all the same.  Some of them I haven't known at all, some I am acquainted with their family, some I have only had casual interaction with, even distant interactions but they have all impacted me, all the same.

I probably spend too much time thinking about death but I can't help wondering if those who have passed o…

Status Quo

I lucked out this weekend.  I was suppose to make a quick trip back to Utah to drop a girl off at the airport. It was actually something Shelbie had committed to several weeks ago but since she can't drive... It's a long story...Anyways, I was prepared to do that but to my surprise, Spencer said he wanted to take the girl.  I was so relieved because I have hit the proverbial wall.  I felt guilty because I knew he wasn't feeling very well and I could see that he was as tired as I was.

On got an unexpected call from our Gastroenterologist on Sunday afternoon.  I was surprised to hear from a doctor on a Sunday but grateful for her call.  She wanted to visit with me about some issues that she didn't want to discuss with the kids around.  I so glad that she was sensitive to whole situation.  I really like this doctor!  She also told me that she had been doing some studying on Dyskeratosis Congenita and wanted to reassure me that we were covering all of our basis.  There is …

We escaped

On our way out of Salt Lake on Wednesday night, we passed an Escape House.  The kids are always talking about this escape place down town so, in my effort to recoup from a rotten sort of day, I told Shelbie to call and reserve us a spot.

The one Shelbie signed us up for was a mad scientist themed room.  The description said there was blood and gore and surprise elements.  For some reason, I thought that meant there would be people jumping out at us while we tried to escape a room so I wasn't exactly going in to this party very excited.

The blood and gore were stickers and paint and the surprise element was giant stuffed spider that fell from the ceiling.  However, we had to escape this room in the dark! Pitch blackness.  Our first chore was to find 4 sources of light.  Those sources of light were three half dead, tiny dollar store flashlights and an old lantern that was only working half the time.

There were various clues hidden, codes and puzzles that unlocked doors and boxes …


We've been in Salt Lake again.  This week was mostly to meet our new Gastroenterology doc.  She was pretty great.  We've been more than blessed to have put together such a great team of doctors this year.  It's been challenging and exhausting but good.  In the past, I spend a fair amount of time getting prepared for each appointment.  The past few months, I haven't had the energy or mindset to do that.

There were so many surprises in one day of clinic.  We arrived pretty late on Tuesday night.  Once we got settled in the hotel, I sat down to check emails and make sure I had all our appointment times straight.  There was a message from MYChart and a letter from our Neurologist that Sam saw a few weeks ago about his vision loss.   I was not at all prepared for what I read next.

Sam has 'Low lying cerebellar tonsils'.  This means that there is a part of his brain that is elongated and pushed through an opening in the base of the skull.  It can also mean he has a d…

Blessings abound

It's been such a busy day just trying to restore order to the house.  Sam did a great job of cleaning up after himself but I left it a wreck.  The vacuum had been broken a few days before I left and was in the repair shop, the washer was in pieces and the garage was full of junk that was in my car to take to the thrift store but when everything happened so unexpectedly, I just dumped it wherever I could and left.

Today, I got the vacuum back, the washer got fixed, laundry is nearly done, I made it to the thrift store, bills got paid and a bunch of other things.

I had a great surprise when two of my friends came over to haul an old chair to the dump that has been taking up residence in the garage.  They also took some things that I was going to try to sell and they are going to take care of all that for me.  It is probably the greatest thing anyone could do for me this week!  I was so relieved.  Everything felt like it was crashing in on me...I know, weird.  Some people appreciat…

Home for now

We made it home tonight!  It was a long, long day.  Not that much was happening with us, other than a crazy, intense blood test that took two days to plan for.  That was done by 10 this morning but then we had to wait for rounds and for the biopsy report to come rolling in so it was late in the day by the time all the loose ends were tied up.

While we were waiting for pharmacy and discharge papers, Shelbie sat in the rocking chair by the window and I sat across from her.  It might be one of the saddest moments of the year.  I asked her how she was feeling about coming home, about not being able to drive for a couple of months or take a shower alone and all the other things that transpired this week.  To be honest, I haven't even sat still for a minute to think about it myself.

She immediately broke down and looked at me and said through her tears, "I don't ever want to forget you mom!  I don't care what else happens to me, I don't care if I die, I don't want …

Hard to complain

It's hard to complain about anything in this hospital...Well, it is plenty easy to complain but you feel rotten doing so when your neighbor is facing an uphill battle and weeks on end of being a patient here.  We really have nothing to complain about.  I am fully aware of the fact that things can always be worse!  We have yet to experience anything quite like some of the suffering I see here.

Shelbie had an alright day.  She had a biopsy today on her arm that is streaked up and down with petechiae and some of that has spread onto her chest.  Her IV infiltrated  today which only adds evidence to the mounting problems with her vascular system. They haven't even been using her IV the past two days so it's only had saline through it.  The hives on her other arm are angry and sore.

The MRI she endured last night only showed that her right leg is larger than her left.  There were no hidden clots. The swelling and pain remains a mystery of sorts.

Tomorrow, they will do a very fra…

Day 6

Yesterday was a mixed bag.

They took Shelbie for her MRI at 5:30.  It was suppose to take about an hour and a half.  By 8:15, she still wasn't back!  I was getting really nervous as I watched the seconds tick by.  Finally at about 8:30,  they wheeled her through the door of her room.  I could tell from the look on her face, she was not okay.

We helped her into bed and she sobbed and sobbed.  3 hours in the MRI!  They had a very hard time with the test.  Interventional Radiology was overseeing things and they wanted to get it right.  Within seconds, her Aide was in the room and immediately picked up the phone for the nurse to bring pain meds. I was so impressed with their quick response.  I guess the guy who transported Shelbie ran straight to get our nurse when he left our room.

While she was gone, Dr. Gundlapalli came by to see her.  He is our Immunologist.  I love him as well.  He confirmed that we are dealing with a rare condition of the vessels.  Takayasu is the name.  He sa…

Day 5

Things are finally falling into place.

This morning, Dr. Shami came through with his team and it was a great visit but emotional as well.  I felt so much gratitude that God blessed us with Dr. Shami.  He has definitely been an answer to prayers and today, I let him know that.  Each conversation we have with him, another piece of the puzzle is uncovered.

So, here is today's run down.  The case for a rare arthritis of her arteries is even stronger.  She is now covered in hives so they have discontinued anymore tests with contrast and even CBC's have been discontinued.  Every time they do anything with her veins and arteries, she has an 'event'.

This morning, she experienced some abnormal bleeding in her gums, lots of blood!  Her arm is covered in Petechiae as well, just from the blood pressure cuff.  Dr. S looked at it and I said, "Oh, don't worry about that, it happens all the time!"

He looked back at me and said, "It's not suppose to happen at …